I Hate This

[Manny]

Hello all my tinnitus friends. I never would have imagined myself venting on a wide open internet forum but I really think nobody else understands at all.
I hate this thing so freakin bad. I hate it so much. I've been through so much shit in my life but I was finally getting things together after years of emotional work, and then I was smacked with this.
Music, the most important thing in my life - gone. Sleeping normally - gone. Instead I have this high pitched screeching in my head 24/7, nonstop. It hasn't gotten an ounce better in six months. And i don't know if it ever will. My "ultrahigh" frequency hearing was wiped out by one devil of a bar and band and that is the cause of this blasted condition.

And nobody fucking gets it. Everybody is totally oblivious and tells you to suck it up and expects you to be perfectly normal, because that's how you look from the outside. Nobody has any clue that this is CIA sound torture x 100.
"You didn't get used to it already?"
"Why don't you try to distract yourself?"
"Well at least you're not 'really' ill"
"Did you try looking on the internet for answers?"
"I can't believe the doctors can't do anything about it"
And the worst
"Just try to ignore it", or

"There must be something you can do about it"
As if I wouldn't try fucking anything, but no I'm not wasting my time with that stupid scammy website you found on a thirty second Google search, and yes I fucking heard that exercise helps tinnitus "symptoms"!! (notice how they never say it helps actual tinnitus, cause it doesn't!)

I think the only ones who have any right to say anything at all are those who also have severe tinnitus, hearing loss. Nobody else gets it. Period. Am i right??
Friends, please tell me you understand. I need support now!

So besides being completely fucked up in my life, I have to deal with everyone's shitty, non-understanding attitudes. I absolutely would have preferred losing a limb for numerous reasons. I'm sorry.

I am so damn upset right now. I will probably be embarrassed of this post tomorrow or the next day. Oh well.

Thank you for listening.
Edit: additions

 

[Luman]

Your situation is certainly terrible, and nobody can predict what will happen, but please do not give up hope that things may improve as more time passes, despite how unlikely that prospect may seem to you right now.

 

[Michellejean]

This is why I don't talk about my tinnitus with anyone. I can't handle the way people treat it as if it were only as annoying as a headache. I love when people say "can't you take a pill for it?"
Excuse me, but why the heck would I be here crying if there was a cure. Ugh. Truth is we only have ourselves and each other to understand this mess. But we're All here for you. Always. I'll never tell you to just ignore it.

 

[Wolfears]

What you are feeling is normal...having any unwanted sound inside your head is simply unacceptable..people are not wired for that kind of torture.
People who don't have this will never be able to understand what it does to you..unfortunatelly.

 

[dayma]

It's OK man. Sometimes others around us may not fully understand what we are going through, but the ones who care, are most likely coming from a good place with a good heart.

Hope you find some peace sooner rather than later!

 

[fishbone]

Hello all my tinnitus friends. I never would have imagined myself venting on a wide open internet forum but I really think nobody else understands at all.
I hate this thing so freakin bad. I hate it so much. I've been through so much shit in my life but I was finally getting things together after years of emotional work, and then I was smacked with this.
Music, the most important thing in my life - gone. Sleeping normally - gone. Instead I have this high pitched screeching in my head 24/7, nonstop. It hasn't gotten an ounce better in six months. And i don't know if it ever will. My "ultrahigh" frequency hearing was wiped out by one devil of a bar and band and that is the cause of this blasted condition.

And nobody fucking gets it. Everybody is totally oblivious and tells you to suck it up and expects you to be perfectly normal, because that's how you look from the outside. Nobody has any clue that this is CIA sound torture x 100.
"You didn't get used to it already?"
"Why don't you try to distract yourself?"
"Well at least you're not 'really' ill"
"Did you try looking on the internet for answers?"
"I can't believe the doctors can't do anything about it"
And the worst
"Just try to ignore it", or

"There must be something you can do about it"
As if I wouldn't try fucking anything, but no I'm not wasting my time with that stupid scammy website you found on a thirty second Google search, and yes I fucking heard that exercise helps tinnitus "symptoms"!! (notice how they never say it helps actual tinnitus, cause it doesn't!)

I think the only ones who have any right to say anything at all are those who also have severe tinnitus, hearing loss. Nobody else gets it. Period. Am i right??
Friends, please tell me you understand. I need support now!

So besides being completely fucked up in my life, I have to deal with everyone's shitty, non-understanding attitudes. I absolutely would have preferred losing a limb for numerous reasons. I'm sorry.

I am so damn upset right now. I will probably be embarrassed of this post tomorrow or the next day. Oh well.

Thank you for listening.
Edit: additions

Sorry for your sorrows. Unfortunately the only people that have empathy, towards you are the people that have tinnitus as well. The rest of the world doesn't get it and cares less. This will not change my friend. You have to protect your ears and ignore and avoid elements that can further.... damage your ears and make your tinnitus louder.

I can deal with the intrusive tinnitus, it's the hearing loss that messes me up. I hope you feel better....

BTW, I have intrusive/non-maskable EEEEEEEEEEE + 3 other lil critters in my head 24--7

 

[Manny]

Friends, thank you all for your responses. It feels very nice to receive some support from people who actually understand!!

This is why I don't talk about my tinnitus with anyone. I can't handle the way people treat it as if it were only as annoying as a headache. I love when people say "can't you take a pill for it?"
Excuse me, but why the heck would I be here crying if there was a cure. Ugh. Truth is we only have ourselves and each other to understand this mess. But we're All here for you. Always. I'll never tell you to just ignore it.

@Michellejean Your entire post speaks to me a lot. The last sentences especially I find very touching honestly. I feel like you get it. Which due to your own situation I'm sure you do unfortunately...as do others here. Thank you thank you.

@fishbone Thank you for your response. Honestly don't know how you've survived so long but you are inspiration for those who aspire to do the same. As someone else once gloomily mentioned on this forum, you deserve knighthood and a castle of medals. Namaste brother.

 

[fishbone]

Friends, thank you all for your responses. It feels very nice to receive some support from people who actually understand!!


@Michellejean Your entire post speaks to me a lot. The last sentences especially I find very touching honestly. I feel like you get it. Which due to your own situation I'm sure you do unfortunately...as do others here. Thank you thank you.

@fishbone Thank you for your response. Honestly don't know how you've survived so long but you are inspiration for those who aspire to do the same. As someone else once gloomily mentioned on this forum, you deserve knighthood and a castle of medals. Namaste brother.

It's been a journey for sure. Lots of sacrifices daily and as we age, it can get more annoying and difficult. I am happy with where I am at. I have 3-4 tones now and just accept it. There been times when I wanted the ringing to stop and go away and I have had my fair share on emotions over the noise. Not much anymore, I just treat the noise like it was supposed to be a part of my life, instead of an alien intruder lurking in and me losing my mind over it. It takes lots of self love, discipline and motivation/dedication to get to this point, but it can happen....

I have to plan out my life and be very selective on what I do and How I entertain my self. I use to have a friend over my place and we would watch monday night football and I have told him many times to not scream or get loud. When a touch down is/was scored he'd scream loud.

I couldn't wear ear plugs because I cannot have conversations, while wearing them. So I no longer hang out with that person anymore. Tinnitus can make us lonely and I am very much someone that will talk to everybody. It's not an easy thing being social with intrusive tinnitus, but that's the life I live and many of us live.

We do our best and push the pace. I don't let tinnitus win and have the final say in my life. I been kicking tinnitus in the butt for over 30 years and Im ready for another 30 years. Hopefully before then we will have a cure and all our blood, sweat and glory was worth it

 

[Manny]

It's been a journey for sure. Lots of sacrifices daily and as we age, it can get more annoying and difficult. I am happy with where I am at. I have 3-4 tones now and just accept it. There been times when I wanted the ringing to stop and go away and I have had my fair share on emotions over the noise. Not much anymore, I just treat the noise like it was supposed to be a part of my life, instead of an alien intruder lurking in and me losing my mind over it. It takes lots of self love, discipline and motivation/dedication to get to this point, but it can happen....

I have to plan out my life and be very selective on what I do and How I entertain my self. I use to have a friend over my place and we would watch monday night football and I have told him many times to not scream or get loud. When a touch down is/was scored he'd scream loud.

I couldn't wear ear plugs because I cannot have conversations, while wearing them. So I no longer hang out with that person anymore. Tinnitus can make us lonely and I am very much someone that will talk to everybody. It's not an easy thing being social with intrusive tinnitus, but that's the life I live and many of us live.

We do our best and push the pace. I don't let tinnitus win and have the final say in my life. I been kicking tinnitus in the butt for over 30 years and Im ready for another 30 years. Hopefully before then we will have a cure and all our blood, sweat and glory was worth it

Fishbone. I am now only 24 years old. I don't know if I can do what you have done (and continue to do) and I definitely don't know if I want to do it either. But I take my hat off for you. You are a warrior in the absolute truest sense of the word. Also thank you for sharing your experience and also NOT preaching some habituation crap (imho) to me. Peace.

 

[fishbone]

Fishbone. I am now only 24 years old. I don't know if I can do what you have done (and continue to do) and I definitely don't know if I want to do it either. But I take my hat off for you. You are a warrior in the absolute truest sense of the word. Also thank you for sharing your experience and also NOT preaching some habituation crap (imho) to me. Peace.

Tinnitus is not easy to live with, but I still live my life. I am in the gym at 8 am almost 5-6 days a week and do my martial arts 4-6 days a week. I use fitness/martial arts as my coping mechanisms with life. I cannot hear too well so conversations are not my favorite thing to do. Tinnitus could make us possibly weaker in some areas , but it sure as hell, makes us stronger in MANY more areas.

The name of the game with tinnitus is ADJUSTMENTS/MODIFICATION. You need to do both, in order to deal with the ringing. I ruined my hearing, due to being foolish and not educated on tinnitus/hearing loss. That's why I come here daily to save people from my mistakes

I may not rank higher in my martial arts because my next exams starts using sticks and it's very loud. I'll probably not test further. Those sticks feel like they deafen my ears and the ringing goes crazier...

I proudly wear my ear plug when it gets loud in the studio. I have no care who sees me putting them in and if anyone asks....I'll gladly tell them as well...My hands shake now and one of my partners asked why my hands shake....I said Life happens man.

I'm bold in my life and do not see defeat from any angle...

 

[Jazzer]

Hello all my tinnitus friends. I never would have imagined myself venting on a wide open internet forum but I really think nobody else understands at all.
I hate this thing so freakin bad. I hate it so much. I've been through so much shit in my life but I was finally getting things together after years of emotional work, and then I was smacked with this.
Music, the most important thing in my life - gone. Sleeping normally - gone. Instead I have this high pitched screeching in my head 24/7, nonstop. It hasn't gotten an ounce better in six months. And i don't know if it ever will. My "ultrahigh" frequency hearing was wiped out by one devil of a bar and band and that is the cause of this blasted condition.

And nobody fucking gets it. Everybody is totally oblivious and tells you to suck it up and expects you to be perfectly normal, because that's how you look from the outside. Nobody has any clue that this is CIA sound torture x 100.
"You didn't get used to it already?"
"Why don't you try to distract yourself?"
"Well at least you're not 'really' ill"
"Did you try looking on the internet for answers?"
"I can't believe the doctors can't do anything about it"
And the worst
"Just try to ignore it", or

"There must be something you can do about it"
As if I wouldn't try fucking anything, but no I'm not wasting my time with that stupid scammy website you found on a thirty second Google search, and yes I fucking heard that exercise helps tinnitus "symptoms"!! (notice how they never say it helps actual tinnitus, cause it doesn't!)

I think the only ones who have any right to say anything at all are those who also have severe tinnitus, hearing loss. Nobody else gets it. Period. Am i right??
Friends, please tell me you understand. I need support now!

So besides being completely fucked up in my life, I have to deal with everyone's shitty, non-understanding attitudes. I absolutely would have preferred losing a limb for numerous reasons. I'm sorry.

I am so damn upset right now. I will probably be embarrassed of this post tomorrow or the next day. Oh well.

Thank you for listening.
Edit: additions

My dear friend - you just spat out the absolute truth of this pile of
"Effing {{{{{{{ SHIT }}}}}}} !!!!!!!"

Words don't come even close do they?
We are all forced to become heroes and stoics !!
Well 'Fuck It' that's not what I want,
not what I signed up for !!!

So, what can we do my friend?
I have people who love me - who think the world of me. Could I bear to let them down ???

I have to try everything I can think of to find a way forward.....though at the moment I'm not sure how?
But I ain't done, quiet yet.
Keep me company buddy.......promise ?!?!
Dave
Jazzer
xx

 

[Nonna]

I'd stay far away from the escrema sticks. And what happens when someone drops a barbell?

Tinnitus is not easy to live with, but I still live my life. I am in the gym at 8 am almost 5-6 days a week and do my martial arts 4-6 days a week. I use fitness/martial arts as my coping mechanisms with life. I cannot hear too well so conversations are not my favorite thing to do. Tinnitus could make us possibly weaker in some areas , but it sure as hell, makes us stronger in MANY more areas.

The name of the game with tinnitus is ADJUSTMENTS/MODIFICATION. You need to do both, in order to deal with the ringing. I ruined my hearing, due to being foolish and not educated on tinnitus/hearing loss. That's why I come here daily to save people from my mistakes

I may not rank higher in my martial arts because my next exams starts using sticks and it's very loud. I'll probably not test further. Those sticks feel like they deafen my ears and the ringing goes crazier...

I proudly wear my ear plug when it gets loud in the studio. I have no care who sees me putting them in and if anyone asks....I'll gladly tell them as well...My hands shake now and one of my partners asked why my hands shake....I said Life happens man.

I'm bold in my life and do not see defeat from any angle...

 

[JohnAdams]

I hate it too my friend.

 

[coffee_girl]

Yep a few months ago my parents decided it was fun to take me to a really loud restaurant for my birthday (it was a karaoke bar and a live band)....I was SO annoyed because on 3 different occasions previously i refused to go to the restaurants that they picked because it was TOO loud. It's like they don't "get it" that I have T, to them it's just small things and I was being picky like a child deciding not to eat broccoli or something.

I don't ever complain about my T and usually keep it to myself, but people are so insensitive to your condition it is really awful. The disappointment you feel when you can't "join" your friends when they go to an arcade or a concert is really disheartening, it feels like your life is heavily restricted every time someone brings it up.

 

[Jazzer]

Yep a few months ago my parents decided it was fun to take me to a really loud restaurant for my birthday (it was a karaoke bar and a live band)....I was SO annoyed because on 3 different occasions previously i refused to go to the restaurants that they picked because it was TOO loud. It's like they don't "get it" that I have T, to them it's just small things and I was being picky like a child deciding not to eat broccoli or something.

I don't ever complain about my T and usually keep it to myself, but people are so insensitive to your condition it is really awful. The disappointment you feel when you can't "join" your friends when they go to an arcade or a concert is really disheartening, it feels like your life is heavily restricted every time someone brings it up.

I have found that we have to be very firm in our conversation with both friends and family, about what our parameters are, about what we experience, about what we have to suffer.

This includes our partners, who may say "but the blender isn't really loud, or that vacuuming the whole house without earplugs should not be a problem."

They have no way of knowing just what we hear, through our cochleas, already denuded by acoustic trauma.

Now that my (adorable) misus understands much more, through my patient approach to educating her, she is very considerate, will warn me if the blender is about to come on etc....
Most intelligent considerate people seem to respond okay, when they've managed to take our serious message on board.
Dave x
Jazzer

 

[fishbone]

I'd stay far away from the escrema sticks. And what happens when someone drops a barbell?

I try to avoid stick fighting. It's very loud and my intrusive tinnitus does not like it at all. The gym does have folks that drop weights. It can be very loud. I use ear plugs, it helps to some degree. My hearing is VERY bad these days and the tinnitus seems to create new tones as well. That's ok, I still live my life and achieve things that I never thought were possible.. These ears will never stop me from living. Only I can stop me from living and doing great things.